Vince Nicholas, a founding member of Amyloidosis UK, reflects on the uncertainty that often follows an amyloidosis diagnosis. He shares why balancing proactivity with patience — and taking time to make decisions alongside family and doctors — can be an important part of the journey.
Transcript
When you get diagnosed with the amyloidosis, you’ve got to be proactive, but also be patient with what’s happening around you technology-wise and medication-wise
You can get a bit frustrated, but, you know, you’re on the same journey as the doctors in most cases.
You just have to be patient and understand that things may be slower or going down a route that may be the wrong way.
The diagnosis, you know, in the early days was brought with uncertainty. Once you get diagnosed, I think the main thing is to be thinking about don’t rush into things.
Be able to take a decision, which is what’s best for you, your family, and the doctors. Don’t rush.
